Across the country, people run, walk, dine out, buy “stuff” and write checks to support breast cancer research. All of this is great. But what exactly is “breast cancer research?” Where does the money go? Who decides which questions are asked? How do we measure success? All of these are incredibly important questions. If we really want to end breast cancer and save lives, it will take more than just raising and spending more money on research. We need a thoughtful, strategic approach to making certain that money is well spent. We need to know that the end result benefits women and men at risk of and with breast cancer, rather than just supporting institutions, individual scientists and drug companies.

At the National Breast Cancer Coalition (NBCC), we know that advocates trained in the science of breast cancer, women and men who are outside the system of science and research, should lead the way. That might sound strange–lay advocates setting a scientific research agenda? We have proven it works. Educated advocates like the ones at NBCC are the only ones with no agenda other than to end breast cancer. Not get published, or promoted or make a profit. Just save lives.

Try to look up how many institutions around the country are working on breast cancer research. Or how many thousands of scientists are doing that work. You can’t do it. Nor can we easily find out what they are doing in breast cancer. There is little transparency in breast cancer research, beyond piecing together federal funding and what information you can find on private grants and associations. The federal government appropriated more than$800 million last year for breast cancer research. It is estimated that private philanthropy exceeds hundreds of millions of dollars each year. There is no coordination of all of this. Now, I am not suggesting there should be coordination of science. Having all researchers work in lockstep would send us down one road and it may be the wrong one. There would be no room for innovation or really “wild ass” ideas. We need diversity of approaches, replication of findings, innovation and even some incrementalism. But we don’t need so much of it. We do need some segment of all of this working to answer questions that are important to people. And we must have transparency and accountability.

The current world of science rewards publication and grant funding begets more grant funding. So the propensity of researchers is to do what will get published and what will get funded–not necessarily what will save lives because, unfortunately, these are not always the same thing. An individual scientist, or her team, at one institution most often is not collaborating with teams at other institutions, who may have a different way of approaching the same problem. Now, scientists will tell you of course they collaborate. Maybe we define it differently. We define collaboration as an open exchange of ideas; sharing of tools, technology and knowledge; learning from one other and moving forward as partners to answer a big question. We haven’t seen much of that. How much of that research funding we have walked and raced to raise is spent on that type of collaboration?

Do we know what questions are being asked? Do we know if those questions are important? We can know. I recently read a posting from a breast cancer survivor who claimed that a patient cannot understand science and any attempt to read about it was akin to hearing “zebras clumping by all the time.” I immediately thought about the iconic Barbie doll that, when you pulled the string, you heard, “Math class is tough.”Back in 1992, people rightfully pointed out how offensive this was and demeaning to women. We can do math. We can understand scientific articles; we can help decide what is important. It is offensive to suggest otherwise.

One of NBCC’s signature projects is to train advocates at Project LEAD® Institutes and Workshops in the science of breast cancer and on research methodology. They learn basic terminology, foundational concepts, and a way to think critically about science and gain the confidence to ask hard questions. LEAD graduates have gone on to analyze and influence the science itself. Working together with scientists, advocates have influenced how researchers view the significance of their scientific questions, how research designs might impact participants and why results need to be important endpoints and not just extend life for a week or two.

In 1992, NBCC successfully advocated for unprecedented federal funding for breast cancer research: hundreds of millions of dollars for the newly-created U.S. Department of Defense Peer Reviewed Breast Cancer Research Program. As part of this new program, I worked with scientists and program leaders to facilitate trained advocates having a seat at the peer review and programmatic tables. Many Project LEAD® graduates have since sat at those tables to review scientific research proposals and to set the research agenda.

As part of NBCC’s Breast Cancer Deadline 2020®, we launched the Artemis Project®, which is our research work on primary prevention, or stopping women and men from getting breast cancer in the first place, and prevention of metastasis, or preventing women and men from dying of it. We are making progress on these two fronts in large part because they are advocate-led.

Math class may be tough for many men and women. That does not mean it creates a barrier. Science can be accessible to all of us–it’s not just for scientists–and it certainly can sound clearer than zebras clumping. Advocates can understand the science of breast cancer and help determine what research questions should be answered. We’ve made progress in getting more trained advocates to the research table. Now we need to put more advocates–who answer to no one, no institution and no industry but to their desire to end this disease–in charge of setting the breast cancer research agenda.

HealthDay (1/13, Dotinga) reports that research published in the Journal of the National Cancer Institute suggests that cancer “remains costly even after the disease has been treated.” Investigators found, for instance, that “non-elderly survivors of colon cancer had extra expenses of about $20,000 annually.” The “extra expenses included direct medical costs, as well as lost productivity.” Meanwhile, for breast cancer survivors “under 65, the economic burden totaled about $14,000, and for prostate cancer it was approximately $9,000.”

SAN ANTONIO, TX – December 8, 2015 – Kimberly Jewett Consulting, Inc., a leader in patient advocacy for life sciences markets, is pleased to announce the addition of Virginia “Beth” Fairchild to their team during the 2015 San Antonio Breast Cancer Symposium.

Beth, a seasoned professional, will hit the ground running as she brings several years worth of hands-on client and management expertise, backed by her personal experience as a metastatic breast cancer survivor and passionate patient advocate. Her qualifications include a successful track record in healthcare marketing and sales, and her extensive experience in specifically, metastatic breast cancer with a comprehensive understanding of this sophisticated arena.

As an associate, Beth will be contributing to the growth of the organization by concentrating on enrichment of client satisfaction. In her new role, Beth will act as a conduit to clients when she designs and implements new strategies, and as a liaison to new opportunity development – translating client needs into viable product enhancements and solutions.

When asked about her new role with KJC, Beth replied, “I joined Kimberly Jewett, Inc. because I wanted to be part of a team actively involved in driving patient needs and public understanding of this disease. One hundred and twenty-three women and men will die today from METAstatic Breast Cancer, and one day I will be one of those 123. I look forward to working Kim and moving forward with the pharmaceutical industry to build pharma/patient relationships and to create support and advocacy programming.”

CEO and Founder, Kimberly Jewett adds, “We are excited, honored, and grateful to have Beth join our team, supporting the needs of our clients. Our passion, combined with our purpose and professional skillset, will truly impact the lives of cancer patients and their families, and we are both blessed to have the opportunity to be that voice. While honoring the patients who are fighting, surviving, and thriving every day of their fight, and remembering the ones who lost their lives way too soon. Together, WE CAN make a difference in the lives of cancer patients and their families. People just like US.”

The Philadelphia Inquirer (11/16, Bauers) carries an interview with Dr. Adam Dicker, professor and chair of the Department of Radiation Oncology at Thomas Jefferson University’s Sidney Kimmel Medical College, who is a coauthor of guidelines developed by the American Society of Clinical Oncology “to help physicians, patients, and their families assess efficacy, toxicity, and costs of the various treatment options.” Dicker said, “The good news in oncology is that…there are now a number of new drugs that have clinical benefit.” He explained that ASCO organized a panel to “look at the best-quality data available” in order to calculate cost of treatment and expected benefits. The panel produced “a very useful visual called ‘Evidence Blocks’ that play a pivotal role when having a conversation with a patient and their family.”

An analysis of data from 46,803 patients with stage IV non–small cell lung cancer (NSCLC) who received palliative chest radiation therapy found that 49% received radiotherapy for longer than 15 fractions and 28% received more than 25 fractions. This treatment pattern “is inconsistent with the results of published phase III studies,” Matthew Koshy, MD, of the University of Chicago, and colleagues reported in the Journal of the National Cancer Institute. In addition, approximately 19% of the patients received concurrent chemoradiation therapy, “a practice that is not only unsupported by the evidence, but one that places the patient at increased risk of toxicity without an established palliative or survival advantage,” the investigators stated.

“This demonstrates that a substantial number of patients requiring palliative thoracic radiotherapy are overtreated, and further work is necessary to ensure these patients are treated according to evidence-based guidelines,” the authors concluded.

Oncology Nurse Advisor reports that “the American Society of Clinical Oncology (ASCO) has updated their antiemetic guideline regarding the use of palonosetron and netupitant in combination to treat nausea and vomiting in patients receiving chemotherapy.” The update “committee recommends that patients receiving highly emetogenic chemotherapy regimens be offered a combination of a NK1 receptor antagonist, a 5-HT3 receptor antagonist, and dexamethasone, with netupitant and palonosetron plus dexamethasone (oral combination) also being an option for additional therapy.” Besides that, the “committee…did not recommend deviations from 2011 ASCO guideline at this time.”

In my original post, going back to June, I mentioned that I had received a positive PET scan. I met with 4 of the top gynecologic oncologists in the Chicagoland area, and each one was consistent in telling me that I had metastatic breast cancer to my ovary that would require a full hysterectomy and bilateral oophorectomy. Divorce? Cancer-again? Surgery? Loose my uterus and ovaries? Was this really happening to me, right now?

With the best opinions in the area from top gyn oncs, I proceeded to surgery, prepared for the next chapter of my life, without estrogen and more surgery and potentially more chemotherapy if the surgery found additional sites of disease.

I was angry & fearful, and could not believe this was happening again.

On the day of surgery I had asked that if the growth was not cancerous to keep my uterus and other ovary. Despite support for that plan pre-operatively, I was actually in the pre-op holding area and my surgeon was recommending the initial plan of full hysterectomy and to remove both tubes & ovaries. What was going on here? We prepare for weeks and on the morning of surgery we change the entire game plan?

Nonetheless, my wishes were followed and the involved ovary was sent for a frozen section which was read as a benign cyst. The surgeon removed both of my Fallopian tubes, and a small piece of my liver, which also turned out to be benign.

NO CANCER! NO EVIDENCE OF DISEASE! I felt like I was just given another chance at life, for the third time.

This specific experience taught me many very valuable lessons.

Multiple opinions are better than one. If I had stopped at the first or second consultation I may have had radical surgery for a benign disease. This is because PET scans can be very non-specific. Every “hot spot” is not the same, particularly in this disease and in the ovaries for pre-menopausal women, as in my case. While PETs can be “positive” or “negative” they can also be “in-between” and depending on the organ involved, may have differing sensitivities (probability disease is present if test is positive) and specificities (probability disease is absent if test is negative).

Secondly, physicians will advise you of what they think is best for you based on the evidence, literature and their experience with similar patients or “cases”. You have to remember your “case” may be different. In reality, my PET scan was “hot” but could have been “hotter” and because of the differences in how the test is performed, it may not have been as “hot” somewhere else.

Thirdly, no single test, as in PET scan, or anyone’s opinion may be that accurate and should not alone guide what YOU want to do. Physicians are trained to battle disease and as medicine has become more sub-specialized with physicians focused in narrower areas, it becomes harder for them to consider the person in as much as the disease or the psychologic impact their recommendations may have for the patient.

Lastly, be your own best advocate. Get multiple opinions, read up on what tests can and can’t tell physicians, search the literature to see the best approach to similar “cases” and finally, read first-person testimonials from other patients about their experiences, treatment and post-operative feelings.

I sincerely appreciate all the support, prayers, and kind words of encouragement. I am fully recovered, and ready to continue enjoying life, while doing the work that I have so much passion for.

HealthDay reports that research published in JAMA Oncology indicates that “the use of MRI scans before breast cancer surgery has risen eightfold over the past decade, even though guidelines on their use in this setting are inconsistent.” The study found that “this increased use of MRI…is also linked to an increase in further testing, longer wait times to surgery, a higher likelihood of a mastectomy instead of breast-conserving surgery, and a higher likelihood of having the healthy, opposite breast removed.”

Today, I flew to Washington, DC., to attend the Press Conference and meet with Congressman Randall M. Hultgren, for the Planning Actively for Cancer Treatment (PACT) Act bill (H.R. 2846) which would significantly improve the quality of care for Medicare patients with cancer. This bill is the top policy priority for National Coalition for Cancer Survivorship, and has the potential to make a real difference in cancer care. Congresswoman Lois Capps (D-CA) and Congressman Charles Boustany, Jr., M.D., (R-LA) introduced the bill and are very passionate and hopeful that we can move it through. For more information on the PACT Act, please go to: www.cancerplanact.org

Experts say most cancer patients currently do not receive a written plan that explains their diagnosis, prognosis, treatments, and expected symptoms, leaving them to navigate the complexities of a cancer diagnosis without clear direction or knowing what to expect from their care. This can affect the physical and emotional well-being of patients, as well as increase costs due to fragmented care.

“This year, more than 1.6 million Americans will be diagnosed with cancer, beginning what is most often an extremely intimidating journey,” Congresswoman Capps said. “Although many of these cancer patients and survivors will receive the best care our health care system has to offer, gaps still exist. The PACT Act would fill in those gaps by bringing the care team and patient together to develop a roadmap for the individual’s cancer care, from diagnosis through survivorship.”

Congressman Boustany said, “As a physician who treated life-threatening diseases, I know just how frightening a diagnosis can be for patients. It takes teamwork between doctors and patients to ensure the patient receives the best possible care positioning them for a successful outcome. The PACT Act is a smart approach that ensures cancer patients receive a clear and thoughtful roadmap taking them from diagnosis to remission and beyond.”

Cancer has a major impact on Medicare beneficiaries. The majority of cancer diagnoses occur in individuals 65 years and older, and the majority of cancer survivors are senior citizens. The PACT Act would establish a new Medicare service for cancer care planning. The planning service could be provided to patients at the time of cancer diagnosis, at the end of active treatment and beginning of long-term survivorship, and when there is a significant change in treatment.

“The PACT Act has the potential to make a real difference in cancer care in our lifetime,” said NCCS Chief Executive Officer Shelley Fuld Nasso. “Medical providers want to deliver the best care possible, but in order to do that, the patient’s wishes must be clearly understood. By encouraging deliberate discussion and planning before, during and after cancer treatment, we can help make cancer patients—and the health system that cares for them—better.”

As a two-time breast cancer survivor myself, I can see the tremendous value a Cancer Care Plan can provide patients and their families. This type of care plan would support patients through their cancer care continuum, at the time of diagnosis, at transitions in active treatment, and at the transition from active treatment to long term survivorship. The process would allow a written plan of care — developed between a patient and their health care team, to support patients managing their care.